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Those suffering with the genetic condition have an average life expectancy of 26, but mum Claire hopes the drug would help them live well past that age.

Jack is currently studying for his A-levels and dreams of going to university so he can become a scientist.

The family, completed by dad Ian, were named as Muscular Dystrophy's campaigners of the year for 2017 earlier this month.

Last year, they visited the Houses of Parliament to meet representatives from NHS England and the National Institute for Health and Care Excellence (NICE), the public bodies which decide whether to approve the drug.

Jack Bosanquet

She said: "The outcome of that is the company are now offering what they call a managed access programme for the boys.

"This means everyone who was on the trial will get some access to the drugs, but it will be managed by local doctors.

"At the moment, there is a plan to go to Queen's Medical Centre once a week for us to have it intravenously, but that is having to go through another company, called Clinigen, who are putting that together.

"Then, it will go to the European Medicines Agency who will hopefully give us the go ahead to access the drug."

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The rare muscle-wasting disease affects one in every 3,500 boys born in the UK..

In 2009, Jack and Tom were both selected to take part in the trial of the new drug, designed to force the body to produce the missing protein, called dystrophin, which prevents their muscles from functioning as they should.

At the time, the boys’ parents noticed a marked difference in their children.

The drug is being used in America, after being given the green light by the Food and Drug Administration, which regulates medicine in the States, forcing a discussion about the drug on this side of the Atlantic.

Tom Bosanquet

It's led to an anxious seven-year wait for the Keyworth family, who hope to find out around Christmas if their boys will be able to use the drug once again.

The 51-year-old added: "Jack has lost the use of his legs which has affected him psychologically, and it would be difficult were he to lose the use of his arms too.

"We think the drug will help him keep the use of his arms so he can continue with studying and go to university."

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Vernon Coaker, MP for Gedling, has campaigned on behalf of his constituents to make the drug available on the NHS.

He said: “I want to say congratulations to the Bosanquets, they have done well, but we need to make sure that everyone can get this as soon as possible and I will be taking it up with NICE.”

The award was presented to them by Karen Attenborough, who said: "A lot of what we do involves campaigning - for rights, for better treatment, for better conditions.

"Although they say they are not naturally ‘the sort of people to speak up’, the Bosanquets are mindful of how speaking out about issues surrounding clinical trials and funding of future treatments for Duchenne muscular dystrophy could benefit the whole Duchenne community."

NICE have confirmed that they are currently reviewing the drug to decide whether it is clinically and cost effective enough to be made available and will publish their findings next year.